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Monday, 28 April 2014

Today, the 28th April, 2014, with little fanfare and not even one triumphal march through the streets of Worthing, I was quietly removed from the opiate naughty step.

After 31 years, 8 GPs and a host of farcical tales so infinite, I could never recount them, I now have a repeat prescription for the tiny amount of opiates that don't even nearly get me through a week.

A nice lady phoned me from the surgery a few weeks ago and explained that my "usage was stable" (?!!?) my needs regular and unchanging (oh if only!!) and (this is a subscript, she didn't actually say these words but if you imagine they weren't implied you've never been on the naughty step) "I haven't murdered anyone at knifepoint for an extra dose or three"

This meant, that just like everyone else, my prescriptions could now be issue automatically and repeatedly without the usual accompanying junkie-hop.

From now on, they would be sitting there waiting for me, accessible and benevolently provided. This is almost too much newness for me to deal with in one big step.

For the last 30 years, I have had to

A) Writhe miserably for a minimum of 72 hours.
B) Call for an appointment that morning or put a request through to speak to the duty doctor. ("The duty doctor is often very busy you know, he's there for emergencies, blah blah")
C) Then, I'd have to explain all over again, every time, to even the most well meaning that, yes, I do still have very severe crohn's, no there haven't been any miracle cures, and no, the missing two-thirds of my bowel haven't grown back.
D) Collect 4 x weekly prescriptions to take to the pharmacy that could be kept there for each Monday morning.
E) Collect said prescriptions weekly, first thing on a Monday morning in-between trying to get two sleepy and often uncooperative pre-teen boys ready for and delivered to school.

For most of those 3 decades, this has been the bane of my life. Way worse than the actual symptoms themselves.

What if your own doctor is away?
What if you get the slightly senile senior partner they can't quite bring themselves to sack?
What if they get the dose wrong or the name or my address? (Which I estimate they did at least 90% of the time, meaning three or four trips where one would clearly never do.)
What if something pops or twists or turns inconveniently septic slap bang in the middle of a bank holiday weekend and you have to explain to those most dreaded of wraiths, the On. Call. Locum?????
What if the pharmacy forgot to order more in or for some reason, Atilla the Hun has been bought in as cover pharmacist and just doesn't like the look of you?

The what-ifs make this the roller-coaster of long term pain conditions something only a fully fledged sickie could ever really know.

With trepidation, Dave set off for the surgery this morning and miracle of miracles, the prescriptions were indeed sitting there waiting to be collected. He took it to the pharmacy and yet more miracley miracleness meant that they had re-ordered the stocks. It was diagnosed right and the dose was even right.

I think I ought to have got some kind of certificate I can pull out at all of those times above when delirious agony has been preferable to running the dreadful pain gauntlet assault course.

Wednesday, 9 April 2014

No-one to come when you call. Bloody sheets, retching as just-cut muscles scream in discordant hell.

No one comes.

You exist not to move. Not to blink, not to breathe. They all rip through you in waves. Tubes tie you there in tangled vitality.

Survival. A real person in the room with you. Watching. The only person in the world. All there is to focus on. We're so surprised to meet. Learning about each other is a revelation.

It is all about hanging on. Somehow, minute by minute, hour by hour.

Always quiet, not dark but dim.

At last they come. Survival leans forward in his chair - will you make him leave?

You Force your eyes to focus first, through sheer force of will. (I must speak, I must explain.)

You test a sound, but Survival is smiling, nodding quietly in his chair.

"I need you."

(Tries again, not enough)

"I need you to stop this drug."

(Pauses. You feel yourself falling, far away, into yourself, but there's only one thing. One important thing you have to do. You know you can. If you could only remember how.)

".......allergic"

Then nothing. No survival, no opinion, no determination. Just nothing.

When you wake, survival has gone and a kind face says they saved you. You smile, falling gratefully back.

But the smile is because they're wrong. You saved you.

That's how we do it. That's what made me able to do it. That's why I can do this but not live the way others do. Because being dangerously, critically ill means that you will always, always find a way to get past Survival. Until you don't. As, one day, we all won't.

Firstly, soooooo sorry we had a Facebook hitch. Just too many health related balls in the air

We now have a Facebook page where you can share links you see joining the #BeyondBarriers debates, talk about ESA and Work Programme reform, and let people know what YOU think. Make your voice heard. Can you all be part of the team for a while and link to the site, ask for likes and share it around? Thank you

There are links all around the web discussing the Beyond the Barriers report and giving their first impressions. We're overwhelmed by the positivity and support from think-tanks to blogs, from Conservative MPs to Labour peers. From campaigners, still tweeting for all they are worth, hoping the public will hear and join them to charities.

Here are some new ones :Catherine Hale, author of the Work Programme section of the report discusses it at Left Foot Forward

If you want to get involved, we've provided the following tools to help :

TWITTER

Starting from now you can follow the new Beyond the Barriers @spartacusreport on Twitter. The account will have news, updates and links throughout the day, so do keep an eye on it as a central info source

The hashtag is #BeyondBarriers

Tweets start NOW!!!!

The next slot will be 12 noon, then 2pm, then 4 pm (Thats 1200 hrs, 1400hrs and 1600 hrs for those with a military strategy!)

Here are some tweets you might like to use :

BREAKING: from #Spartacus : groundbreaking report into disability

benefit flaws - and how to fix them. #BeyondBarriers http://bit.ly/R2hD2k

We hope to have staged links available, which will link to the case histories you wrote for us on the Beyond the Barriers blog at http://beyondthebarriersspartacus.blogspot.co.uk/, explaining how benefits or support have helped you to cope, and even to move on. Please visit the blog and add comments

Saturday, 5 April 2014

We're all really excited to announce the launch of the new Spartacus website!

http://www.spartacusnetwork.org.uk

You can still find all of our past work there with a few new additions

Stef Benstead has taken over the running of the site. 2 years of campaigning is like 412 effort years so huge thanks to Jane Young, the previous site director who produced and guided so much important work.

The old address, http://wearespartacus.org.uk is now defunct but bear with us while we set up a redirect to the new address.Stef is one of our lead researchers on ESA and has produced some seminal work already such as ESASOS, a report into how successfully Harington recommendations had been implemented and the Spartacus submission on ESA to the Work and Pensions Committee. Next week, Spartacus is on the march, so please watch twitter and Facebook extra carefully and if you want to be involved, email me at suey2y@gmail.com before WednesdayIt will be a great chance to launch the re-designed, updated site and I would appreciate it so much if you could help me to let people know about the new address.

Wikio

Gadget

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.